How to Improve the Attitudes to Consenting and Decision Making in Dementia Patients - Article Example

Dementia patients Dementia patients How to improve the attitudes towards consenting and decision making in dementia patients Introduction The number of elderly people suffering from dementia is on the rise. It is the decline in an individual’s mental capacity which is severe such that it interferes with the daily lives of the affected individuals (Crichton & Koch 2007). Clinical research on the disease is important though it requires the consent of patients. These patients have impaired impairment of their cognitive functions thus making it difficult for them to provide adequate informed consent. It is important for these patients to contribute to important decisions about the provision of their care. The consent of the patient or their refusal to undergo the interventions for their diagnosis and treatment, they should contemplate the resulting benefits, and consequences of the decision they make in that regard. The question of the competency of an individual to understand and take responsibility for their consequences is not a legal consideration but rather a clinical determination (Dening & Milne 2011). The individuals suffering from dementia may be in a position to participate in various decisions making but due to their impaired memory, they might not demonstrate their comprehension of their treatment options. Thus, it is always important to ascertain the goals, wishes and the preferences of the patients instead of relegating the responsibility of decision making and consent to family members or other surrogate decision makers. However, there is an expected rise in the proportion of elderly people with such chronic illnesses as dementia and the other associated strain on the formal providers of care. That is why various health care providers are coming up with new and innovative solutions to support relatives as they care for their persons with dementia. They have come up with various innovations including use of ICT, which complements ordinary care and increase the daily care and the safety of individuals suffering from dementia (Dening & Milne 2011). The patient of an individual suffering from dementia Most of the individuals that suffer from dementia continue residing in their homes and it is upon their relatives to care for them. The dementia patients lose their cognitive function and are unable to act autonomously. They therefore rely on the decisions of other especially their relatives. Most of these relatives use a lot of time surveying and supervising these dementia patients. Living with patients suffering from dementia is not easy for the relatives (De Aroaz 2011). The care giver has to deal with the wandering and high level of worry in individuals suffering from dementia. Progress of the illness brings about problems in orientation of time and space and is a potential to various dangerous situations. Such individuals may live home at the middle of the night resulting into anxiety for the relatives in case of unattended exits in their homes. In the event that a patient runs out at the middle of the night, the relatives get very worried and they even result into using locks and chains to confine the patients and prevent them from wandering around. Use of ICT in caring for dementia patients The use of ICT has two main functions. One of them is assisting to alleviate cognitive deficits and the second one is in the surveillance. In addition to various alarms used in surveillance, the relatives also make use of Global Positioning System (GPS), to determine the position of the patients. ICT also assists the relatives and the patients in meeting their daily needs including the contribution to the benefits for the relatives of the dementia patients. The relatives of such patients are so enthusiastic about the use of ICT in caring for the patients since it has made their work easier. Methodology Thus, a study was conducted to describe the reflection of the relatives on the different kinds of ICT devices that are used in daily care of these patients. A descriptive qualitative approach was used that was based on various individual interviews. The participants consisted of fourteen spouses of individuals between the age of 62 and 89 years. They were selected through a purposive sampling to achieve their variations in the age, sex and the situation of living of the participants. It was required for the participants in the study to be a relative of an individual living with dementia and having ample knowledge of using ICT devices or having previously cared for a dementia person using ICT. The relatives were identified by the personnel at the relative caregivers support centre in a municipality in central Sweden. Interested relatives were contacted and given detailed information about the aim and procedure of the study. The participation was voluntary and the participants informed that they could quit at any time they wanted. There was a total of nine interviews conducted five at the informants home and the other offer at the support centre. They were tape recorded and they lasted between 30 minutes and 68 minutes. The interviewer asked questions regarding the use of ICT devices and how the respondents had received information on the ICT. There were also questions about the perception of the relatives on the ICT, decision making, and reflections on the integrity and the overall self-determination in using ICT when caring for dementia patients. The head of the support centre gave their written consent for the study. Results and discussion The overall findings of the study revealed a shift between the safety of the needs of the relatives and that of their dementia patients. It showed what was perceived to be the need for persons of dementia when dealing with ICT. The findings had statements about reflection on ICT relating to time, functionality and place. For time, there was a perceived interest for ICT in the past, the present and the future. Place was concerned with temporary and permanent changes in the living conditions, while functionality was concerned with various design aspects. In the theme of ICT as an aspect of support in daily life, the respondents revealed that ICT it helped in maintaining independence for the patients with dementia. In one case, a relative gave their dementia patients a phone whose phone numbers were programmed and pictures put to ensure that the dementia patient could call their friends and relatives in case of a problem. It also helped them in getting help in the emergency situations. Often, the relatives indicated that they used safety alarms to seek help in emergency situations for them and their dementia patients. The ICT also helped the relatives in preventing harm on the dementia patients. This often occurred when the patient needed to leave home unaccompanied and used a door alarm to help catch up with the patient and brought them back home. ICT also had various internal and external conditions which consisted of knowledge, abilities, skills and various financial aspects. The relatives indicated that they had varying skills, abilities and levels of knowledge with the dementia patients. The age of the patients, sex and disease severity determined what kind of ICT that the individuals could use. In terms of the financial aspects, the relatives indicated that the ICT devices were quite expensive and their application to the municipality to get the devices proved futile. They also had to make a difficult decision whether to use the ICT device or not (De Aroaz 2011). They described various ethical considerations in decisions of including patients with dementia on whether to use the ICT devices or not. They indicated that it is quite difficult to make decision for a person that one has lived with for sometime even if the individual is struggling with dementia. Second study: Electronic tracking for dementia patients Introduction Electronic tracking using GPS is becoming famous in tracking the whereabouts of dementia patients. Its use is raising a lot of ethical concerns on the consent and decision making of dementia patients when such issues are concerned. People are arguing that such patients are human beings too and as such require their own privacy. The study has incorporated the process of deciding to use electronic tracking in terms of the underlying values and factors about the use, the involvement of the patient in the decision and the strategies that care givers incorporate to negotiate through the ethical issues that arise through its usage. Background The challenge that faces the usage of such tracking devices are in terms of balancing the potential gains brought about by this electronic monitoring with the potential rights that are infringed in the process. However, the use of GPS could be justified if it is able to reduce institutionalization of the patient and allow them to remain at home. Moreover, the patients are in need of their privacy and such tracking could harbor such forms of privacy. The reason is that it enables the relatives or care givers to identify the whereabouts of the patients at all time. Problems arise especially when the device is attached to an individual in a way that hinders the patients from moving the device. In addition, consent in the case of cognitive impairment adds complexity to the electronic tracking in the care for dementia care. Various legislation including the mental capacity act 2005 indicates that there is need to make an informed decision making and it protects any presumption about capacity. Incapacity is only declared if an individual is unable to understand the information given, and be in a position to make a decision from it. The act suggests that if the capacity of the dementia patient is unavailable, then it is important for another individual to make the decisions on their behalf for the best interests of such dementia patients. Thus, in situations where the dementia patient understands the implications of the tracking device have no problems at all. However, there is a high level of wandering that appears in the moderate to severe stages of dementia. Thus, it is important for the care givers and the relatives to be accountable to be in a position to support dementia patients to enhance their well-being and their autonomy in addition to making considerations of the interests of other individuals who include the care givers and the dementia patients. It is also important to consider the role of care givers in decision making and the extent to which they communicate their information on the tracking devices. It is important for the care givers to enhance the person-centered care of dementia patients (Chen, Duh, & Ng 2009). They should ensure that the process of decision making in usage of tracking devices should understand the perspective of such patients and involve them as much as they can. It is important to consider what is done to the dementia patient and the means by which it is carried out. Thus, the question of consent is important in how the tracking device is introduced to the patient and how the dementia patient receives it. Moreover, there is stigma that is associated with the use of tracking devices on the dementia patients. The dementia patients associated the devices with surveillance, thus stigma arise from the social construction about the use of such tracking devices. The wandering behaviors of such dementia patients are also associated with strain of the carer. Thus, decision on its use should also consider the needs of the carer. The reason is that carer has a right to maintain their separate identity free from their caring role. The dementia patient would have felt concern for the carer was it not for their dementia condition. Methodology The study was aimed at exploring the experiences of the carer in using the electronic tracking devices. It aimed at identifying the extent to which the dementia patient is involved in decision making and the ethical dilemmas that the care givers experience in the event of using the tracking devices. The grounded theory informed the conduct at which the qualitative interviews are conducted with ten care givers in this study. Focus on grounded theory was integral to explore the experiences of the care givers about the usage of the tracking devices. The carers were recruited through a certain tracking device provider. The sample size was dictated by the feasibility and the numbers that were available to participate. Five interview questions were used and defined as themes that emerged in the interview. Each interview was recorded with an audio equipment. Ethical approval was granted from the Oxford University of social sciences and humanities inter-divisional research ethics committee. Findings and discussion Care givers explored the process which they were able to make a decision, describing the extent to which various persons suffering from dementia were involved in decision making. The decision that they made to use electronic tracking devices reflected the dominance of protecting the safety of the dementia patient within the value systems of the care giver. Various themes emerged included the following: Values informing decision making The care givers wanted to protect the dementia patients from harm was an important approach to curb the wandering behavior (Castellot, Giuliano & Mulvenna 2010). Protection from harm was the priority of care givers over making justifications on liberty and autonomy. Though in some instances care givers found it necessary to restrict the dementia patients, they also considered the preservation of freedom for the dementia patients as important. They indicated that maintaining the freedom for both the dementia patients and their care givers was very important. For some of the care givers, they decided to use the tracking device to enable the dementia patient to have their freedom. Safety Other care givers indicated that the reason why they used the tracking devices was to ensure the safety of the dementia patients (Boger & Mihailidis 2011). Most of the carers prioritized safety over privacy. Five of the care givers identified that electronic tracking devices diminished the privacy of dementia patients though they preferred them over exposing the individual patient to harm. Independence and freedom The care givers indicated that independence and freedom was important for the quality of life of dementia patients. This was despite the belief that they saw the need for some form of intervention despite the adverse effects that wandering around outside the home could bring about to these dementia patients. Despite the fact that some of the care givers identified the importance of enhancing the independence for the dementia patients, they felt unable to do so. The use of such tracking devices also enabled the care givers to preserve their independence. Context of decision making The care givers had to assess how well the electronic device would be received by the dementia patient reflecting various personality factors (Bausch & Han 2006). According to the care givers, there are some individual dementia patients who did not like the use of the tracking devices on them. The decision that the care giver had with the dementia patient was significant in making decisions to use the tracking devices. This relationship influenced the way in which the care givers made decision on the electronic tracking. The role of decision making There was a considerable variation when it came to seeking consent on the dementia patients before using the electronic tracking devices (Bulgurcu 2010). Some of the care givers indicated that consent was only possible in the early stages of dementia. This is because they of their active ability to give their informed consent in the usage of the tracking devices. The care givers indicated that in case of mental in capacity, other individuals could make decisions on behalf of the dementia patients. However, most of the care givers felt challenged when they made decisions on behalf of their family member with dementia though they had no option. Other care givers also discussed about electronic tracking device with the dementia patient (Bartlett, P. 2008). What can be done? It is evident that dementia patients suffer from issues to do with cognitive reasoning. Both authors have suggested their own recommendations on how dementia patients should be handled in terms of their decision making and giving consent. One author has recommended the use of ICT technology to ensure that they are able to make work easier in terms of taking care of the patients. The other has suggested the use of relatives to make decisions for the individual patient. All these are good recommendation but it is important to consider the point of view of the patient. Most of these dementia patients feel dementia. To start with, I could consider coming up with a measuring equipment to determine the level of dementia that a patient is in at the moment. This should be given to the care takers of the patient. Then depending on the score, the care taker can then determine whether the dementia patient is able to make own decisions or not. Conclusion The two studies show the importance of the consent and decision making of individual dementia patients in matters concerning their provision of care. In the first study, the care giver or the relative to the patient uses ICT devices to make work easier for them in course of provision of care to the dementia patients. In the second study, the care givers use various electronic tracking devices to ensure that they could track the location of their dementia patients at all time. Some of the patients suffered from stigma due to the social interpretations of the use of such devices on them (Banerjee, & Wittenberg 2009). They felt as if they were being excessively monitored by their care givers. Moreover, the studies showed the importance of creating privacy independence and decision making for the dementia patients. Some care givers indicated that though they felt that the dementia patients were in need of their privacy and independence, they felt that the use of a tracking device was important in maintaining their privacy. Moreover, despite the need for seeking the consent and decision making for the dementia patients, this was only possible during the first stage of dementia. As it progresses, it becomes difficult for the patients to make informed decisions. Thus, it necessitates them to have decisions made for them by their relatives or care givers. This sometimes plays a huge toll on such patients who have to deal with doing what they are told to do sometimes without their consent but it is always for their own good. In the UK, there are approximately 800,000 people living with dementia costing euro 23 billion each year (Astell, Ellis, Bernardi, Alm, Dye & Gowans 2010). There is a lot that can be done to curb this which includes increasing the rates of diagnosis in the area. In 2013, the UK published a national report on dementia which gathered national and local data on dementia and set out the progress made. 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